Our Wealth, Our Health –
Jean A. Wooldridge, M.P.H.
Advisor for Cancer Communication Technologies,
This chapter examines the tea leaves of emerging technologies for the most fruitful areas of crossover value to health decisions, by spotting bellwether industries of similar information asymmetries. It examines changing tools and roles for growing consumer-centrism in personal finance, healthcare, private aviation, and law. It seeks to understand the technologies of managing and measuring, the transformations of growing transparencies in our processes, and how an increasing sense of collective stewardship forged between people and their machines can lead beyond effectiveness to wisdom, for individuals, communities, and the world.
Asymmetry, aviation, bellwether, consumer-centrism, health, law, management, measurement, technology, transparency, wealth
(submitted for publication as a chapter in Future of Health Technology, Volume 80 Studies in Health Technology and Informatics, Edited by: R.G. Bushko 2002, 298 pp., hardcover ISBN: 1 58603 091 4)
As ubiquitous computing becomes a reality, individuals and communities will find their bodies and their actions creating an exuberant wellspring of rich, complex data. These biological and sociological data can be ignored, used alone or shared with others for various reasons – for personal gain or for social good. Issues that will seem fractal in nature will spring from these converging technologies in genomics, proteomics, nanotechnology, biosensors, body networks, agent technologies, distributed networks and supercomputers, and smart environments. They will spur entire industries and advocacy movements, and puzzle even the most far-sighted policy makers.
So, where should our short-term strategic binoculars for health decision tools be focused?
The industries that can serve as bellwethers are those with the greatest information imbalances among stakeholders, have similar characteristics for their consumer decisions, and use new technologies in different ways and at different rates of adoption than healthcare . The ones we consider here are: finance, private aviation, and personal law.
Technology most transforms industries with the greatest information asymmetries. These bellwether industries share sharp asymmetries, demographics, rising consumer demand, and some overlapping impact of economic and environmental issues. (For example, just as today’s physicians will not be able to serve the aging population and their chronic diseases, today’s 36,000 certified financial planners cannot serve all 100 million U.S. households.)
Consumer-centrism is the future for all these industries, as seen in how people are currently using new self-help tools in finance, health, private aviation, and personal and small business law, and how they will be using them. AOL/Time Warner understands this shift wherein consumers will purchase “customized bundles of content properties across various media”, on demand . Tools in retail, entertainment, and education  are also significant because of the level of private investment and early adoption.
In finance, there is a customer self-service revolution. Celent Communications predicts that rapid growth will bring online financial users to 20 million by 2005 in the U.S. It finds that services are moving from a marketing ploy to a competitive necessity, and, at the same time, moving from simple calculators to sophisticated planners and probabilistic simulators to give people more control of their wealth . Increasingly personalized tools, even “bots” (cyberspace robots), are appearing to add more natural consumer interface choices.
In healthcare, industry, government, and academic thinkers are also acknowledging a customer revolution, following the lead of pioneer self-care advocates such as Tom Ferguson, M.D., of The Ferguson Report and Harvard . Dr. Ferguson proposed the transition from industrial-age medicine to information-age health care in The Millennium Whole Earth Catalogue” in 1994, with individuals managing their health, pulling in various resources, including peers, and using health professionals in well-defined roles of facilitator, partner, or authority . CEO Craig Froude, of WellMed, online health management services, states, “We are often compared to the financial world and we enjoy that comparison. People are taking more and more control over their financial welfare and well being, and we can do the same with their health assets, so that in one place they can manage their entire family’s well-being.” . Federal agencies increasingly recognize this in funded programs:
Alex Pentland and The Media Lab’s Health Special Interest Group of the Massachusetts Institute of Technology present a reasonable view of the future:
General aviation and law have smaller audiences than finance, but their tools and trends offer good lessons for healthcare and share many of the issues (high risk, incomplete knowledge, history of information asymmetries among stakeholders, shifts of power, etc.). In general aviation, for example, a multimillion-dollar program for small aircraft called, “Highway in the Sky”, funded chiefly by NASA, with the aviation industry, will bring an advanced set of pictorial tools armed with intuitive menus to the cockpits of future small airplanes. An MIT researcher involved in pilot interfaces predicts, “I could take someone with no training and in five minutes have him flying a plane all the way through a landing .”
In personal law, the article, “Online Law: Why the Legal System Will Never Be the Same Again” shares important perspectives:
The following observations explore the usefulness of bellwether industries for helping us to wisely tend these shifts to self-management in healthcare. Of critical importance, is to ground these devices and analytic tools with a deeply personalized context of values. For as we grow in understanding of how technology is transforming our healthcare, we will also grow in understanding of how our individual health is embedded in the rich fabric of the health of our communities and of our world and how that translates to a wider stewardship of resources.
This human stewardship increasingly appears to be in symbiosis (hopefully) with our technological progeny, as noted by such thinkers as Ray Kurtzweil (The Age of Spiritual Machines) , Michael D. McDonald [24,25], Bill Joy , Howard Bloom , and Leonard Kleinrock, the UCLA scientist who established the first Arpanet node three decades ago .
Businesses know this. Individuals forget. Perhaps that is one reason why people tend to have trouble managing their wealth and managing their health.
To make good decisions in wealth and health, people need to have equal access to information, understand the critical impact of their decisions on their quality of life (par-ticularly for decisions made early in life), be able to work with incomplete and dynamic data within time and fiscal constraints, understand risk, have various literacies (financial, economic, health, scientific, and technological), and be able to evaluate and work with a variety of professionals and resources. Real time measurements set into meaningful con-texts for influencing our daily decisions and long-term planning are hard to come by. Par-ticularly for decisions made when young, such as eating habits and saving patterns.
Personal health management is receiving increased attention, as the burden of disease shifts to chronic care and as the role of behavioral choices in disease, such as diet, exercise, smoking, and alcohol consumption, is increasingly acknowledged. It’s estimated that “lifestyle behaviors alone contribute to 50% of an individual’s health status .” This, combined with the swelling demographics of older Americans bringing their emerging health problems to bear on overworked medical systems, has prompted the investment community and research agencies to pay attention to personal health management technology for monitoring devices and planning programs.
Behaviorally-generated health data is difficult to obtain and demands self-discipline: try tracking calories and fat grams. The current medical devices aren’t uniformly tied to useful planning tools and many, like telemedicine home devices, were developed more with the health professional, than with a self-caring patient, in mind .
However, pieces of the puzzle are present. We don’t have yet a smart tooth with a chip that discreetly chirps when we are within 10% of our desired caloric intake for the day, but we can strap on an electronic pedometer that synchs with our computer to graph our athletic progress. Online diet sites offer customized interactivity. At least one study found that weight loss tripled for people monitoring themselves interactively with the Internet versus people only using the Internet for information . Monitoring will become more convenient, as interactive textiles translate lab breakthroughs to store shelves, with shirts (Sensatex) that can track heart rate and breathing, and parkas (Columbia) that can track and respond to body temperatures .
Consumers will gain more control as the locus of health management moves back to the home, where it was before 1900. William A. Herman, of the Food and Drug Administration’s Center for Devices and Radiological Health, observes, with regard to the current demographics, economics, and technology forces:
Good data doesn’t guarantee good management. In wealth as in health, often we know what we’re supposed to do or even want to do, but we don’t do it. Other times, the biggest challenge is figuring out what we do want to do.
Citibank Private Bank has a full-time psychologist available for wealthy clients and estate matters. In many industries, multi-disciplinary teams, including cultural anthropologists, are forming to help us to become more self-aware. Affective computing using robots, computers and sensing devices that can mirror our emotional states by measuring physical gestures, unconscious movements, and physiological responses will help us to learn (more than we wanted) about ourselves. These sensing technologies will collect data independently and transform it into personalized learning tools, intimately responsive to our needs.
For example, a posture-monitoring chair covering that recognizes fidgeting was presented at the year 2000 International Mechanical Engineering Congress and Exposition . Are you having trouble following some complex treatment choice information in a teleconference with your doctor about a recently diagnosed heart condition? A future chair, programmed with information about how you learn under pressure, could, even before you’re aware of discomfort, prompt a change in camera angle, or in learning modality - from real time face-to-face to text, video, or instant messaging with another doctor – to help you stay on track in your discussion.
Measurement tools are imperfect. Sometimes the very data they leave out are the critical ones for the best decisions. Wall Street is responding to this by moving from deterministic, linear retirement calculators to probabilistic simulations, which add in worst-case scenarios. However, in making decisions in wealth and health, even the most sophisticated simulation will leave out the historical and loving knowledge of us that an old friend would bring.
Fortunately, there are researchers wrestling with these “ineffable” factors in our decision-making. In trying to measure intuition, compassion, empathy, and aesthetics, you can lose the ability to access them, according to Boisot’s E-space theories and other recent educational models like Kolb’s learning cycle, and Sch`n’s reflection-in-action and reflective practicums. Joseph V. Henderson, M.D., M.P.H., Director of Dartmouth Medical School’s Interactive Media Lab, is ensuring that these dimensions are brought into technology, theory and applications for physician education. He is developing a model for virtual education for primary care physicians on topics such as HIV counseling, that capture these important dimensions .
Technology most transforms industries with the greatest information asymmetries. As technology progresses through different societal sectors and industries, we can watch to see where there is the greatest unequal distribution of information (read “power”). That point of “pain” is where we will see the greatest changes in stakeholder roles and how people work together. The mere existence of diverse information channels implies opacities and imbalances of information and power, and affects people’s bargaining power and their ability to make a sound decision.
Because the financial sector and the health sector have striking imbalances, their transformations by technology will be equally impressive. Many people, besides ourselves, create the data context in which we manage our wealth and health; channels and “informational chokeholds” abound.
Transformation watchers are alert not only to points of pain, investment dollars, and policy changes and demographics, they also watch technology convergence, early-stage venture capital fund flows, and “people flows” as industries transform.
In the wealth arena, in the late 1990’s, the growth of online day traders influenced the market with their collective individual actions, and spurred regulatory bodies to curb their effect. Consumers demand more sophisticated tools. Of the top U.S. financial institutions surveyed in 2000, over 80% already offer some form of simple online planning tool (calculators), but only 20% offer sophisticated planning tools, like Monte Carlo simulations. By 2005, Celent expects this proportion to flip . Some of the technologies shaping online personal finance include streaming/real-time portfolios that direct live stock quotes to PCs, direct-access trading that bypass the middleman brokerage personnel, account aggregations that work as “screen scrapers” to find all of your accounts at various websites and compile them on one screen, and in-car investing, such as the partnership between Fidelity and GM’s OnStar that allows you to use voice commands to access your account or place a trade while you are stuck in traffic .
In the health arena, the effect of the individual is also becoming measurable, at least in process measures. Healthcare futurists advise of the coming consumer-centric healthcare world, fueled in part by the demographics of the aging boomers who have assertively transformed most institutions on their march through life’s milestones, and most certainly will do so with a healthcare system ill-equipped to provide the level of personalized service they expect.
The technologies developed in other industries and appearing in other parts of our lives also will lead to expectations for health care technologies. The “worried well”, are becoming the “wired well” . They are seeing that other industries, such as automotive safety, are using sensors to monitor critical functions, in addition to helping customers use their products. Backup warning systems can prevent you from backing into a wall or a car, or keep you from running over a tricycle or a child .
In the public agenda, evidence of change is appearing in government standards for health privacy, and culturally and linguistically appropriate service in health care are making processes more transparent and including previously excluded stakeholders .
Scientists are reaching out through online multimedia projects, such as “Coffee Break”, a collection of interactive tutorials at the National Center for Biotechnology Information at the National Library of Medicine. A recent title under “What’s Brewing?” was “Honey, I shrunk the genome .” Consumer advocacy programs are securing heightened recognition within agencies. Trusted government sites, such as Healthfinder and CancerNet are often the first stop for savvy patients .” Dramatically:
The demographics of caregivers and the approaching “juggernaut of chronic illness”, also will force change and bring investment into assistive technologies. Molly Mettler of Healthwise, Inc, notes:
The impact of the government’s Human Genome Project will be felt across the entire health continuum from prevention to end-of-life issues. It will lead to profound changes in medical practice and accelerate consumer-centrism, with genetic scans for diagnoses, accelerated drug discoveries, tissue engineering, nano-machines for medical tasks, cloning for transplants, phamacogenomics for personalized drugs and targeted deliveries, and a shift in paradigm from treating acute illness to predicting and preventing diseases by managing their risks .
Efforts to address these demographic and scientific challenges and coming consumer-centrism, include research by the Center for Future Health at the University of Rochester, NY, where its “smart medical home” encourages academe and industry partners to focus on the individual, and affordable home-based technology.
Processes and information are being made more transparent by emerging tools and the expertise of “information architects”, such as Richard Saul Wurman and Edward Tufte [47,48].
Bots (robots in cyberspace) are migrating from the video game world to bridge text and live chat. Pioneer Funds introduced three financial “CyberGuides” of artificially intelligent “bots”  and photo-avatars are helping patients and families feel more comfortable when undergoing extensive treatments far from home .
Collaborative filtering software and intelligent agent technologies, such as those developed by the Intelligent Agents Lab at MIT, under Patti Maes, which can give rise to “communityware”, connect like-minded large, decentralized groups of people for pursuing interactions. Applications include “personalization, user profiling, information filtering, privacy, recommender systems, electronic commerce, communityware, learning user profiles” and reputation, negotiation, and coordination mechanisms . These technologies can build trust in online communities, and speed comparative healthcare analyses.
Groupware combined with visualization tools help stakeholders make better decisions. A collaborative graphical interface from IBM facilitated a Colorado land use issue discussion “by airing political, economic, emotional, and environmental concerns in a controlled, moderated setting .”
Distributed computing (peer-to-peer applications) involves the public in research, especially for biotechnology, by creating “distributed” supercomputers with cycle-sharing and large databases. It began with the SETI (Search for Extraterrestrial Intelligence) project in Berkeley, California in 1999. Intel’s “PC Philanthropy” project, launched in 2001, wants cycle-sharing to be as common as signing up to be an organ donor when you get your driver’s license. Brigham Young University is constructing a global genealogical genetic database with the help of individual volunteers who provide a pedigree chart, one tablespoon of blood, and a consent form. File-sharing a la Napster will enable cancer patients to enrich current online communities. Some commercial companies, like Porivo Technologies, are beginning to pay people rent for sharing power from their PCs .
Affective computing aims to create machines that can “sense, recognize and understand human emotions, together with the skills to respond in an intelligent, sensitive, and respectful manner toward the user and his/her emotions” Work at the MIT Media Lab, under Roz Picard, includes expressive glasses which can learn an individual's learning patterns and graphically display their interest or confusion expressions, by measuring muscle movement in the corrugator and frontalis (eyebrow) muscles. At the Blue Eyes project at the IBM Almaden Lab, cues of users’ emotional and physical state are captured on video cameras, and analyzed to provide information that can be used by machines to adjust how they interact with humans and, even more directly, devices such as the emotion mouse, are being prepared that can correlate physiological data with emotional states .
Visualization tools for “live” dynamic databases create transparencies of complex data, adaptable to different learning styles. The World Economic Forum uses technology from The Brain as a Knowledge Navigator to visualize conference proceedings in six dimensions: region, industry, event, topic, content, and people and to show how these relate.  One epidemiologist “combined multivariate categorical analyses and interactive statistical graphics to provide a novel interface to a multimedia data set (text, images, audio) dealing with Vietnam War trauma .” SmartMoney (smartmoney.com) uses “Map of the Market” to show changing financial trends dynamically with intuitive graphic interfaces, color coding, and detailed data-mining drill-down boxes. It has sparked interest in adaptation for audiences with varying quantitative literacies, including cross disciplinary teams .
Simulations with haptics and other sensor technologies are incorporated into games, training and problem-solving. Pharmaceutical companies such as Entelos, are borrowing from aircraft engineering. Simulations for Boeing’s 777, which has 3 million parts, ran computer flights and crashes under all weather conditions before building any physical models. Entelos is testing drugs for diseases like asthma, by distilling scientific article data into parameters and equations for “in silico” biology. These simulations mimic the body’s complex interactions between genes and molecular events . Avatars and semi-immersive virtual environments are conveying a sense of personal connection for patients and teens . Commercial simulations for individuals are popular, such as Microsoft’s “Flight Simulator”, which sold 21million copies by 1999 , and SimHealth, a variant of SimCity, which challenged players during the 1990’s:
Wealth and health decisions are very personal and very critical to our quality of life. In health and wealth, as in aviation and law, the decisions we make are some of the most difficult in our lives. They share characteristics which can illuminate how we choose. Some of these are inherent and some are “bound” to current resources and systems. Others carry seeds of the technology symbiosis which is evolving.
With all these tools, consumers need assurance of privacy, quality, evaluation, protection, and evidence-based criteria. Various government and private groups are addressing standards (e.g., Health on the Net, the Internet Healthcare Coalition, the American Medical Association, the World Wide Web) with various laws and reports, (e.g., The Health Insurance Portability and Accountability Act of 1996, and the 1999 report “Wired for Health and Well-Being: the Emergence of Interactive Health Communication”).
A Wall Street Journal article noted that a March 2001 report on healthcare quality from the U.S. Institute of Medicine, a governmental advisory agency, declares:
Even when there is strong scientific evidence, it can take 15 to 20 years for new drugs and devices to be used in general practice by doctors and hospitals . Despite pitfalls and perils, these decision tools hold promise for bringing the latest evidence into practice much earlier. Evidence-based medicine and meetings on risk communication, such as the 1999 conference at the National Cancer Institute, note the extraordinary opportunity afforded through the new technologies for communicating and evolving evidence-based libraries of best practices .
In 2000, Fidelity’s website had a scenario for a surviving spouse who needed to deal with estate planning. “Karen found herself alone for the first time at age 62, when her husband died suddenly of a massive heart attack at the age of 67. All of her life, Karen had focused her energies on caring for her family and household. She had neither the training nor the experience to prepare her for the weighty financial decisions that now befell her. What is her financial status and how can she best make decisions to preserve her quality of life?”
The scenario works through various assets, a monthly pension income, a 401(k), and IRA, and an annuity contract from a life insurance company. What should Karen do with these assets? Should she opt for the monthly income or choose the lump sum pension distribution? Should she consolidate assets, or keep them where they are?”
In the commercial sector we find places like Fidelity coming forward with many decision tools for people like Karen, and a commitment to multi-modal education, (phone, e-mail, voice, and in person). Industry-wide we can expect to see increasingly sophisticated online financial planning tools with updated capabilities, which will integrate customer data and spending habits to highly personalize action plans. Business strategists envision web interactions like the following in the near future, using the web’s ability to dynamically customize content similar to the following:
Understanding and evaluating medical information is a difficult task for laypeople. Even individuals who are highly skilled in risk assessment and analyzing quantitative data can be frustrated when it comes to their own illness.
Intel’s Co-Founder and Chair, Andy Grove, Ph.D., addressed this dilemma in Fortune’s May 1996 cover story “Taking on Prostate Cancer”. With no clear consensus on treatment and few tools to predict risks of side effect, prostate cancer left those affected without good decision-support data. Dr. Grove, concluded that:
Fortunately, in the years since Dr. Grove drew this conclusion, technology developers began work on new decision-support tools, although the scientific evaluation of these tools is still in early stages. One firm is NexCura (operator of cancerfacts.com), a developer of an online data-driven tool called The Cancer Profiler™ . This tool was created by a medical device inventor who had recently developed a new method to stage prostate cancer. While lecturing to patients around the country, he discovered that men were confused about how to use the vast quantities of data from the Internet for their individual situation. When the developer’s own father was diagnosed with prostate cancer, he researched this dilemma further. He was stunned to find that there were no good resources for helping patients weigh scientific data, treatment options, and side effects against significant quality of life issues, such as the risk of impotence and incontinence.
The Prostate Cancer Profiler was his answer to this problem and people have responded. From the fall of 2000 to the spring of 2001, cancerfacts.com grew from 10,000 to over 21,000 users, employing all 16 cancer Profilers online to help frame discussions with themselves, their families, and their doctors. The Profiler provides extensive personalized information based on 128 data points that patients enter online. These entries relate to medical history, test results, and personal preferences for quality of life, which the Profiler then matches with scientific data from cancer studies in the literature and prepares an interactive bibliography with links to research studies.
Surprisingly, NexCura found people running simulations with their online files, sometimes several times a month, to try different lab data and personal quality of life preferences. They tried scenarios such as “What if the tumor grew? What if I changed my ratings of this side effect? Would my treatment choices change?“
This new tool has hit a critical nerve for providing online, interactive quantitative data analysis and simulations and informing stakeholder discussions between patients, families and health care providers, as well as peers.
We can expect ahead, that, just as retirement tools in the personal finance arena are moving to more complex simulations, and more critical evidence-based evaluation, so will these health decision tools.
As technology moves through industries and flattens the information asymmetries, power shifts. In health care, power is shifting between physicians and patients. In general aviation, between air traffic controllers and private pilots. One physician who understands this power shift and embraces the value of aviation as a bellwether industry is Richard Rockefeller, M.D.
Dr. Rockefeller practices primary care in Maine. He is the founder and President of Health Commons Institute, an instructor in family medicine in the Maine Medical Center-Mercy Hospital Family Practice Residency Program, and Chair of the U.S. Advisory Board of Doctors Without Borders. He is also a private pilot.
Dr. Rockefeller uses the concept of “onboard medical guidance” to draw parallels between the PKC Knowledge Coupler, a “point-of-care” software program which links patient data to scientific literature, which he uses in his medical practice, and onboard navigation guidance systems for small planes. His institute champions “information technologies that support better medical decisions and free up health care participants for the human work of wellness and healing .”
As a physician, Dr. Rockefeller feels that it is unrealistic to expect the professional to keep abreast of the 20,000 new articles in the biomedical literature each year. He believes that using computers in discussions with his patients leverages his skills and medical art. As a pilot, he observes that even small planes can now afford sophisticated aviation onboard graphical systems which keep pilots abreast of critical information such as weather, land features, other aircraft, etc., giving pilots more independence from controllers. He notes that:
The legal field traditionally has had great imbalances of information among stakeholders. But Internet technologies are accelerating the shift of power from lawyers to the non-professionals. Like healthcare, law is moving from professional- to consumer-centrism.
Thirty-five years ago, the legal self-help movement began with one book, How to Avoid Probate. Now, a leading publisher, Nolo Press, has more than 100 titles, and projects over $13 million in sales for 2001. Its online consumers access an encyclopedia, a dictionary, legal updates, and “Auntie Nolo’s” commonsense advice . Academics are publishing curricula online, with 47 cyberlaw course websites free at a University of Pittsburgh site. And, state governments are joining: Arizona set up a self-service center in 1995 with access by phone, Web or in-person. Without using a lawyer, a battered spouse can obtain a domestic violence protection order on the same day of application.
Ralph Warner, Executive Publisher at Nolo, found that in just five years, consumers online could: find the law, get legal questions answered, prepare and file documents, resolve disputes (online mediation is just emerging), find a lawyer, and buy unbundled, tailored services from lawyers. These tailored services are a striking departure from the past:
Imagine parallel unbundling for healthcare services.
A pilot’s bodily senses may not always relay trustworthy perceptions; when flying in clouds, you can’t tell if the plane is flying level by how you feel. So, when flying under instrument flight rules, pilots perform routine visual cockpit scans to check data from the plane’s instruments and adjust their piloting. Hopefully, we’ll be able to do that for our bodies in the future, but for right now, this is a helpful metaphor for healthcare strategic planners. And for people committed to building bridges for sharing knowledge between societal sectors.
Four levels of scanning are useful: the bellwether industries, the business horizons within them, edited sources, and the sources for earliest market intelligence. Each level brings its own opportunity for strategic intelligence and potential partners to ensure that the interests of the healthcare consumer and the behavioral scientific community are adding value to the product development cycle. This is crucial for the evaluation and diffusion/dissemination areas, where there long has been a disconnect between the “feast of research and the famine of diffusion and dissemination .”
Scanning bellwether industries, like finance, aviation, and law, reveals new technology tools and consumer patterns linked to those industries’ decision characteristics. Within those bellwether industries, we can be watching for trends and product development across the business horizons (short-range of 12-24 months, mid-range of 2-5 years, and long-range of 5-15 years). At these points, it is easiest to determine, with appropriate partners (i.e., research and development groups in technology companies and industry-partnered academic centers) how the consumer and scientific communities bring value to the table.
There are many “edited” sources of information and strategic partners. These include research firms such as Forrester, digest subscription services such as COR Healthcare Resources, newsletters such as SNS Newsletter, and Release 1.0, conferences such as TED (Technology, Entertainment and Design), RoundTable, Agenda, and Pop!Tech, high-tech industry online and hardcopy magazines, such as Industry Standard (R.I.P.), Red Herring, and Upside, e-mail ‘zines such as the Kaiser Daily Health Policy Report and email lists such as venturewire.com. For earliest market intelligence, outside corporate and government research and development labs, hints can be gathered from:
Hopefully, these public and private sector dialogues will become more accepted practice as the benefits are examined and publicized by new groups researching and supporting inter- and trans-disciplinary work in health and environmental sciences, such as the Hybrid Vigor Institute [74,75], and as government agencies require cross-sector partnering in research.
Technology, ethics, and global thinking are shaping our approaching future. Researchers at the Oxygen Project, at MIT, and the Endeavor Project, at the University of California at Berkeley, are working on what the early ubiquitous computing environments might look like. Many think that the supercomputers, desktop PCs, handhelds, smartphones, and MEMs (microelectromechanical systems) of the current networks will simply disappear and become pervasive, like today’s electrical power grid or like a future “smart dust” .
As we develop these technologies, we must simultaneously develop programs for examining their ethical implications. The rapid development of these networks and other converging technologies hold great promise and great peril . Ubiquitous networks, genetic engineering, nanotechnology, and robotics, all tax our social dialogue and our wisdom. Profound ethical questions arise for us as individuals and as members of our global community.
After visiting a wired senior-care facility that provides health monitoring, Bill Donahue in the Atlantic Monthly asked: Will we equate surveillance with freedom? Oatfield Estates in Portland, Oregon, e-monitors every move of elderly residents via an infrared badge and sensors in ceilings and walls. Beds transmit weights and record restless sleep to attending staff, and if an Alzheimer patient wanders into the kitchen, the burners lose power .
Bill Joy, Co-Founder of Sun Microsystems, noted in his provocative WIRED article, “Why the Future Doesn’t Need Us”, that we need to have planetary level safeguards on how we use new technologies that are converging:
An example of wise foresight was the establishment of the Ethical, Legal, and Social Implications Program, (ELSI) as an integral part of the U.S. National Human Genome Research Institute (NHGRI). NHGRI has committed 5 percent of its annual research budget to study ELSI issues at the same time the basic science is being studies so that ELSI solutions can be developed before the science is integrated into healthcare practice .
Global and systems thinking are increasingly informing the strategies of private corporations and public institutions as they seek to understand individuals, communities, nations, and the world. The World Resources Institute’s Digital Dividends online database captures case studies for public/private partnerships to bring “the benefits of connectivity and participation in the e-economy to all of the world’s people” . Diverse partners, including the Rockefeller Foundation, BBC World Service, the European Union, and WHO fund another global venture, the Communication Initiative, which tracks and shares the use of electronic communications in international development . The use of complexity theory for understanding how the nonlinear dimensions of social, cultural, economic, technical, and ethics meet in the “crucible” of telehealth is increasingly acknowledged . Multidisciplinary research in health, prevention, and chronic disease management is also moving to a larger playing field as it reviews how individual choices, the physical and social environments, and the economy, play into disease or health.
UNESCO’s Observatory on the Global Information Society, the U.S. Central Intelligence Agency, and Sandia Labs, are all factoring health into their agendas in new ways, citing public health or aging populations, as security threats due to potential destabilization of national infrastructures. The World Health Organization and the United Nations have put the interrelatedness of public and private health, economies, and social justice on high agendas, particularly with the increased scale of terrorist attacks in September 2001.
Health as a broad concept for our bodies, our communities, and our world will become firmly anchored by the myriad of datapoints woven into understandable interfaces by the metamanaging technologies. As these transparent interfaces evolve, it will become increasingly clear how our personal health is tied to that of our neighbors, our nations and our world and how our ethical decision processes will affect everyone.
For our bodies, imagine using an electronic scanner to find real time data on pathogens coupled with a functional MRI reading. Overlay this with pertinent genetic information, complete with timetables spanning our lifecycles, as well as any exposure factors (data from our home, clothes, and swallowables) that might be relevant at the onset of an illness. Correlate these data with symptoms or subclinical signs. Just as Smart Money’s MarketMap gives a slice snapshot of how the stock market is doing, this graphically interfaced metamanager could quickly picture for us the state of our bodies and put it into a context for prevention or disease management. For example, it could reveal novel patterns from biological, behavioral, and environmental data that could correlate chronic vague symptoms with mold colonies in residential crawlspaces, a common but often missed health factor, in areas of the U.S. like the Northwest and Texas.
For our communities, imagine if everyone from the pre-school parent to the utilities chair to the manufacturing plant owner could program personalized interfaces for viewing overlays of data from the environment (air and water quality), health (school and hospital records), and compare their local data with the efforts of other communities and national agendas like the U.S. Department of Health and Human Services’ Healthy People 2010 health indicators.
Mike McDonald, of Global Health Initiatives, envisions, a “middleware/service” layer to the national health information infrastructure, which would consist of networking software providing bridges to information resources for everyone from the schoolchild to the government policymaker:
For our planet, imagine these metamanagers, with their layered collaboratories and personalized visual, haptic, and auditory interfaces, giving us hope for a shared stewardship. We could analyze social and environmental factors such as pollution levels, green house emissions, population densities and dynamically inventory and track speciation . Data visualization tools  and the sciences of complexity could unmask the relationships between our decisions and their social and environmental consequences. Very-long term scientific studies would reveal the power in long-term trends, and counter the commercial pace of research, which can be confused by tracking “noisy” signals too closely . Even now, NASA technologies that allow for GIS mapping of various biological events enable interfaces with health events so that we can see the connections between ocean temperatures, algae blooms off the coast of Peru, and cholera outbreaks inland .
These new ways of addressing asymmetries in information and of transparent seeing, accurate mirrors, and deep understanding will do several things, if we choose. They will address imbalances of power by expanding the partners at the decision-making table from policy makers and trained specialists to include all stakeholders, including laypersons . They will release the harvests of research, too often trapped in isolated silos of academia, to enrich our daily lives and long-term social and environmental decisions. They will unmask the relationships between our decisions and their consequences, even across generations. They will mirror how foolish or wise we have been in creating our virtual progeny - the global mind of technology – who will be our partners in extending our intelligence. And they will infuse a sense of responsibility toward ourselves, our families and communities, our nation, and our fellow nations, because we will be able to see, and virtually experience, how our decisions will affect our collective future.
This brings us back to the quotes at the beginning. Our wealth and our health are both important resources for ensuring happiness and our ability to contribute during our lifetimes. How we handle these resources and how we develop our intelligent technology partners is a reflection of our stewardship values. It has been suggested, “In the end, a symbiotic culture composed of human and digital individuals may be a more effective steward of the earth’s resources than humans would be by themselves .”
“Symbiotic stewards” - intelligences for personal, community, and world wealth and health. How fascinating it will be to witness how we, as humans, mature in collaboration with the intelligences we are now shaping – and which, in turn, are shaping us.
Note: The above article reflects personal opinions, not institutional affiliations, nor acknowledged persons, unless specifically stated.
Jean A. Wooldridge, M.P.H., is Strategic Advisor for Cancer Communication Technologies, Office of the Director, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland. She is on loan from the Cancer Prevention Research Program of the Fred Hutchinson Cancer Research Center, Seattle, Washington. She is Principal, St. Cloud Communications, Bellevue, Washington, whose mission is to link communities of shared imagination and practice for ensuring cross-sector dialogue supporting consumer e-health technologies.
Mary Akers (Poppy Lane Enterprises); Rita Altamore and Fran Lewis (University of Washington); Dean Anderson (CORHealth); Mark Anderson (SNS Newsletter); Stewart Brand (The Long Now Foundation); Renata Bushko (Future of Health Technology Institute); Maggi Cary (Vox Medica) and Adam Darkins (U.S. Veterans Administration); Denise Caruso (Hybrid Vigor Institute); Mary Jo Deering, (U.S. Office of Disease Prevention and Health Promotion, DHHS); Tom Eng (EvaluMetrix and eHealth Institute); Philippe Fauchet, Cecelia Horowitz, and Alice Pentland (University of Rochester’s Center for Future Health); Warren Feek (Communications Initiative); Tom Ferguson (Harvard Institute of CyberMedicine and Online Health, Pew Internet & American Life Project); Scott Griffen, Deb Cablao, Virginia Meade, Roger Finger, Stephen McGeady (Intel); Bob Croyle, Bernard Glassman, James W. Hansen, Jon Kerner, Gary Kreps, Janice Nall, Barbara Rimer, Chris Thomsen, Stacy Vandor, Paula Zeller, (National Cancer Institute, Division of Cancer Control and Population Sciences, and Cancer Information Service); Edward E. Harbour (IBM WebSphere Foundation); Deborah J. Bowen, Nigel Bush, Ann-Marie Clark, Robert W. Day, Lee Hartwell, Peggy Means, Robert Robbins, and Heidi Unruh (Fred Hutchinson Cancer Research Center); Joseph V. Henderson, (Dartmouth College, Interactive Media Lab); Will Homes (Porivo), Pattie Maes, Sandy Pentland, Roz Picard (MIT Media Lab); Michael D. McDonald (Global Health Initiatives); Molly Mettler (HealthWise); Kathleen Miller (Miller & Associates); Laura Landro and Walt Mossberg (Wall Street Journal); Kent Murphy (Center for Excellence in Medical Multimedia, USAF); Darin Murphy (Computech Information Service); Cyndi Ohmann (Ohmann Productions); Roy Pea (SRI Center for Technology in Learning), Ryan Phelan (Medical Advanced Research Applications and All-Species Foundation); Richard Rockefeller (Health Commons Institute); Beth Short and Joanna Schade (St. Cloud Communications); Tad Simon (IDEO); Kathy Stanley (eAdvisor, joint venture with Ernst & Young and E*Trade); Karla Steele (Steele and Associates); Eve Stern, Catherine Hennings, and Michael O’Leary (NexCura/cancerfacts.com); Linda Stone (Microsoft); Chris Stout (Stout Ventures); Ted Stout (ROI), Jeff Sutherland (PatientKeeper), and Christine Thompson (Informing Arts).